Living with or caring for someone with a brain tumor is a confusing and difficult experience. The journey is unique because patients are confronted with standards of care including chemotherapies and radiation therapies, with known side effects familiar to other cancer journeys, yet this disease also presents with significant neurological disorders. Overnight, we have to become experts in the disease, treatment options, symptom management, and further complications that accompany this disease. The physical needs are so demanding that often the other challenges of living with a brain tumor involving our emotional and spiritual health, also daunting to deal with, are neglected. This can cause long-term consequences impacting the quality of life of the brain tumor patient and all those involved in their care.
Those who are familiar with the brain tumor experience know that there is nothing quite like it, and it can be difficult to relate to others living with serious disease or chronic illness. In order to provide more support for the brain tumor community, in partnership with the National Brain Tumor Society, we are excited to announce we are launching monthly Brain Tumor Virtual Support Conversations where patients and their care partners can talk about the brain tumor experience with others who are currently walking, or have walked, the path. We welcome patients and care partners at any stage of the brain tumor experience, from newly diagnosed to those who have lost loved ones. Calls will take place on the third Sunday of the month at 4 PM PT/7 PM ET.
Just as the disease and its treatment may progress over time, so, too, should the support for those on this journey. We look forward to learning about your experience, sharing with others, and collaborating to support you and your loved ones.
Please click here to be linked to the NBTS website for instructions on how to join!
Adam Hayden (@adamhayden) is a graduate trained philosopher, blogger, and speaker. In June 2016, Adam was diagnosed with the aggressive brain cancer, glioblastoma (GBM). Adam regularly lectures to both medical students and clinicians on topics related to medical education, bioethics, and narrative medicine. In 2018 Adam was awarded the Distinguished Alumni Award from the Indiana University School of Liberal Arts. Adam is active volunteer and state advocate with the National Brain Tumor Society (@NBTStweets). Through this affiliation, Adam attends scientific meetings and research roundtables, featuring clinical oncologists, researchers, and regulatory bodies. Adam co-moderates the Brain Tumor Social Media (#BTSM) monthly Twitter chat, (@BTSMchat).
Adam serves as a consumer reviewer for the Congressionally Directed Medical Research Programs (CDMRP) Peer Reviewed Cancer Research Program (PRCRP). He is a class of 2018 participant for the American Association for Cancer Research (AACR) Scientist-Survivor Program, and he is a class of 2018 ePatient scholar for Stanford Medicine X | Ed.
Adam documents his journey as a graduate trained philosopher living with glioblastoma at his personal blog, www.glioblastology.com. He lives with his wife and three young children, aged six, four, and two years old, in Indianapolis, IN, USA.
Lisa O’Leary (@lisaoleary524) is an attorney in California. She received her undergraduate degree from California Polytechnic State University in San Luis Obispo and completed her legal studies at Thomas Jefferson School of Law in San Diego. Since then, Lisa has had a robust and varied career, with practice areas including medical malpractice, insurance coverage, toxic tort, landlord-tenant disputes, personal injury, and workers’ compensation.
Lisa became an unwilling member of the brain tumor community when her husband Patrick was diagnosed with glioblastoma in September 2014 after suffering a seizure. Despite excellent surgical resection, chemotherapy and radiation, Patrick’s case was complex from the start due to a severely debilitating focal seizure condition. Lisa acted as his care partner and used her legal experience to be the most effective advocate she could for his care. Unfortunately, Patrick passed away just ten months after his symptoms first presented on July 11, 2015, only 48 days after their wedding.
Since losing Patrick, Lisa has become a devoted advocate with the National Brain Tumor Society where she initially served on the Bay Area Brain Tumor Walk Planning Committee. Currently, Lisa is a member of the Pacific West Regional Board, the Patient and Caregiver Engagement Advisory Group, and the recently assembled Community Editorial Committee. She is also a planning committee member/co-moderator for the online brain tumor network on Twitter (#BTSM) and blogs about her experience on this website. She became a stakeholder with the Brain Cancer Quality of Life Collaborative where the focus is optimizing palliative care for those with brain cancer. Like Adam, in 2018 Lisa participated in the American Association for Cancer Research's Scientist Survivor Program, a unique program designed to build bridges and unity among the leaders of the scientific and cancer survivor and patient advocacy communities worldwide. Additionally, she served as an eCaregiver to the End Well Project, an annual conference where the goal is to create a cultural shift to normalize conversations about mortality throughout life, and make the end of life a more human-centered experience.
It is Lisa’s hope to use her legal background and passion for the brain tumor community to improve quality of life for both patients and their care partners.
A version of this post also appears on the End Well blog. I am honored to announce my participation as an eCaregiver Ambassador for The End Well Symposium, taking place December 6, 2018, in San Francisco, CA. It will be a “day of learning and connection as we engage with one another, across disciplines, to transform the end of life into a human-centered experience.”
When the person you love is diagnosed with a life-threatening — and often, quickly, life-ending — illness, it changes you. Plans for the future are no longer realistic. Trivial concerns are immediately forgotten and replaced by a new, painful reality that you only theoretically considered in the past. You find yourself in the unfamiliar and highly stressful role of care partner, consumed by the desperate struggle to save their life.
I was mesmerized by Patrick when we first met. Not only was he strong, handsome, successful, and funny, he also had the biggest heart — having spent his life being of service to others. He inspired me to be the best version of myself, and I had no doubt he was my person. In 2014, after a few years of dating, we began the search for our dream home where we planned to start a family. We had great jobs. I had found my “happily ever after.” Or so I thought.
In the middle of the night, I woke up to the sound of Patrick’s voice echoing in our house. I followed the noise, only to find him sitting straight up on the living room floor, talking so loudly he was practically shouting. All that came out was jibberish. I called 911, and what followed was a nightmare.
While in a medically-induced coma, doctors discovered that Patrick had a mass in his brain. Within weeks he underwent a craniotomy which confirmed our worst fear: glioblastoma. I did not know much about brain cancer, but I knew GBM killed Patrick’s sister a decade earlier. A quick Internet search revealed that the average survival was 15 months after diagnosis. All the plans we had made for our future came to a standstill.
Patrick had an incredibly difficult course of treatment. He had uncontrollable focal seizures that resulted in bouts of postictal psychosis. During these episodes, the Patrick I knew and loved all but disappeared. Only eight months after his first seizure, Patrick was told that, if he continued treatment, he might have a year to live. This year of life would likely include more time in the hospital. Having spent five months as an inpatient where he was subjected to treatments that simultaneously sustained his life while also taking away so many of the things he once held dear, Patrick decided he wanted to go home.
In this moment, I took stock of what Patrick’s life had become. He had lost all of his independence: He was in a wheelchair, he could not be left alone because his confusion put him in physical danger, and he could not read or write. I realized that pushing him to carry on this way would be the most selfish thing I could do. Instead, with my support, Patrick courageously ended treatment and was given a prognosis of three to six months.
Shortly after entering hospice, Patrick and I married in a backyard ceremony. It was beautiful and perfect day. Forty-eight days after we vowed to love each other forever, Patrick died in my arms.
For me, the healing process has been slow and often isolating. As a 31-year-old widow, I found myself in the middle of an existential crisis as I confronted questions about my own mortality. I tried discussing my thoughts and fears with my loved ones, but I found that this topic makes most people excruciatingly uncomfortable.
This experience made me acutely aware of just how death-averse our society is. We seem to genuinely believe that if we do not talk about dying, we will somehow escape our fate. As a result, we create a whole host of problems for both ourselves and our loved ones. We do not get wills drawn up because we think we are too young or that we do not have enough money to worry about making these plans.
We fail to talk about our wishes should something happen, so when (not if) something does, the burden of difficult decision-making is placed on the shoulders of our loved ones. We make it harder on everyone involved when we avoid these critical conversations.
Nearly the entirety of Patrick’s illness was focused on staving off the inevitable rather than being concerned with what he really wanted. At every turn, the traditional medical model advocated for more — more treatment, more drugs, more tests. When did we actually stop and ask why? We didn’t. We were completely consumed with adding quantity to Patrick’s life rather than quality. We got caught up in the machine of treatment protocol, which rarely pauses long enough to consider the person behind the disease. I often wonder if Patrick’s voice was drowned out in the chaos, unable to be heard over the doctors, insurance companies, and even me. I wonder whether he would have wanted to do things differently? I don’t know because I was too scared to ask.
I realize it will require a major societal shift to start talking about death and dying openly, but that does not mean that I have to perpetuate the culture of avoidance and silence. It is my hope that sharing my experience will encourage you to think and talk about your end of life wishes, if not for your sake, then for those you leave behind.